Mervyn Rothstein Interviews
Todd E. Golde, M.D., Ph.D.
Todd E. Golde, M.D., Ph.D., is executive director of the Evelyn F. and William L. McKnight Brain Institute of the University of Florida. He oversees neuroscience and neuromedicine research programs across the University of Florida campus. A professor of neuroscience and neurology, Dr. Golde joined the University of Florida faculty in 2009 and became founding director of the university’s Center for Translational Research in Neurodegenerative Disease, which he led until taking charge of the McKnight Brain Institute in December 2016. He is also director of the NIH funded 1Florida Alzheimer’s disease Research Center group of institutions.
An internationally known expert in the scientific understanding of Alzheimer’s disease, Dr. Golde has published more than 240 papers that have been cited more than 30,000 times, (https://scholar.google.com/citations?user=X_9xacsAAAAJ&hl=en), and has expanded his leading-edge research to include other neurodegenerative diseases, cancer and even malaria. He is lead investigator for the Facial Pain Research Foundation’s Gene Therapy Research Project, at the University of Florida, to find the cures for TN.
Dr. Golde spoke with Mervyn Rothstein, who was a writer and editor at The New York Times for nearly 30 years and now writes the Stage Directions column – a series of interviews with theater directors – for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005.
How and why did you become Involved In the “World” Of Scientific Research?
TG: I’ve loved biology from as far back as I can remember. The real catalyst was when I was in my junior year in college. I didn’t know what I was going to do. I was thinking about going back and teaching at a boarding school for a while before I figured out what I was going to do with my life. But I was a biology major at Amherst College and I took a course with a professor named Richard Goldsby, a wonderful teacher, who was basically teaching a graduate level course to undergraduates. We had to write a term paper, a research-hypothesis type paper, the first time I’d had to do that in college, and the response back was that this was one of the best papers he’d read in many years, undergraduate or graduate. Please come talk to me. I think you might like to do research.
Your laboratory conducts disease oriented research with specific, but not exclusive focus on neurodegenerative diseases such as Alzheimer’s disease and Parkinson’s disease. How did you get involved in developing a research project to find a cure for Trigeminal Neuralgia and related neuropathic pain?How did the development of this research project come about, and what motivated you to take on the leadership role?
TG: I make no claims about being a facial pain or trigeminal neuralgia expert. I’m just thinking opportunistically about how we can make a difference. When I came to the University of Florida, I was the founding director of the Center for Translational Research in Neurodegenerative Disease. The chair of the department of neurology at that time had hired somebody named Dr. Andy Ahn. Andy worked on headache and pain, and the director needed a place for him. I had some space at that time, so Andy was a scientific neighbor, and we would have discussions.
The University of Florida is one of the hotbeds in the world in terms of a gene therapy approach based on adeno-associated viral vectors – we call it AAV for short. A former dean actually discovered this virus. One of our senior faculty members participated in creating the first gene therapy vectors around it. My lab had already been using AAV vectors, but we doubled or tripled down when we came to the University of Florida. AAV has a naturally affinity to get into neurons.
So Andy sort of triggered this, but my bandwidth was stretched at that point – it’s still stretched. I kept on tweaking Andy to go down this road. Andy left academics, and at some point I said I should do this.
We felt it could be something that could be rapidly translatable. Finding a cure for trigeminal neuralgia is a huge unmet medical need, but it’s an orphan disease that doesn’t affect enough people to attract a huge amount of attention.
There’s a chance for harm if we get into humans, but the nice thing about working with trigeminal neuralgia is we can at least start our initial studies in humans in people whose next option is surgical ablation of the trigeminal nerve. That means that there’s an out if we actually happen to make people worse. When we do these kinds of trailblazing experiments or envision them in humans, we need to make sure that if something could go wrong we have a way out.
Now we’ll begin the animal phase of study – testing in animals. And I know how much this research can really affect people’s lives. It may not work, but we have everything in place to test it. So let’s try.
If Gene Therapy isn’t new, why do you believe that it can work to block pain signaling in the nerve?
TG: It really comes down to technical details. People have used the wrong vectors before that had their own liabilities. I honestly just don’t think people have thought that much about this approach.
Last year, gene therapy had its first really radical major success outside of the eye, which was with children who had a disease called spinal muscular atrophy (SMA). They were treated systemically with a AAV vector – a different flavor of the same thing. These kids basically get spinal motor neuron degeneration when they’re young, by the time they’re two years old, typically, they die. Fifteen children were treated with huge amounts of virus, and reports last October showed that every one of these kids was alive at two years of age. And those with high-dose vectors, many of them were almost asymptomatic. At that age the expected survival rate would have been eight percent. So there are some children walking and living normal lives after gene therapy who otherwise would be most likely dead.
So I think that was a turning point in the field, to say this, AAV-based gene therapies, really will have its place in modern medicine. And that study in SMA was much more heroic and much more challenging than what we envision. So I think the time’s right. We know we can deliver the gene to the nerve. So now it’s just finding the right gene that will dampen pain signaling in that set of neurons, hopefully without doing harm.
Supposing your theory and project is proven successful. What implications or lessons wil this work provide for other researchers?
TG: I think it would say that perhaps the gloves come off on gene therapies for many disorders, especially things that are targeting nerve cell dysfunction.
Because of the Hippocratic Oath – physician, do no harm – we need an out, so we wouldn’t want to go and do this on intractable sciatic nerve pain. Because what happens if you make them worse – you can’t cut their sciatic nerve without serious implications.
But I think success could open up the door to many different approaches targeting pain. And given the current opioid epidemic, driven from people at least initially taking these medications to treat chronic pain – (whether that’s right or wrong or medically appropriate is another question) – I think this viral approach enables us to deliver the medicine or treatment precisely to the cells or organ or nerve and hopefully avoid the systemic side effects that would come from taking a pill or an antibody or other approaches.
Carter & Cheryl Orlet
How Cheryl Orlet and Her Family Cope
With Trigeminal Neuralgia
By Kathleen Sweeney
Cheryl Orlet is an amazing mother of three, two boys and one girl, of which one of the boys and the girl are twins. Although she is a TN Warrior, as we call them, she still manages to attend almost all of their soccer and baseball games and competitions. Her daughter is a dancer and when she is competing Cheryl tries to fix her hair and her makeup but her hands shake too much to do it. Other mothers help out by telling her to sit down and let them get her ready. It is this kind of support that carries her through. “The noise at those competitions is just so loud! I sit there just trying to smile for her. I put on a brave face. I don’t want her to see how much pain I am in. I have amazing friends who help me out so much.” But she worries that her suffering is affecting their childhood. Her deepest concern is that she is somehow robbing them of the carefree years all children deserve. They worry that their mom isn’t feeling well and that they might be making too much noise or are disturbing her in some way, causing her pain to worsen.
It all started seven years ago in 2011. “I was having an ungodly amount of pain that I think I stayed awake with for four days straight … just crying.” She could not get relief. She went to the emergency room and they sent her to an ENT doctor who sent her to see her dentist. Everything came up clean there so they sent her to her primary physician. As she told him “… there is this invisible line drawn down the middle of my face. The right side is just – I’ve never ever felt pain like that before. Even after having gone through two C-sections and having root canals done, I’ve never been in so much pain.” He told her it sounded like Trigeminal Neuralgia and referred her to a neurologist who gave her so much medication that she couldn’t function … and he just kept upping it. So she quit him. She finally found one she really liked and he gave her trileptal, which has minimal side effects. She wasn’t as groggy and tired. It allowed her to function. As she says, “The most important part for me is, I can suffer … and put up with a lot, but I hate anything that takes away from my kids.” She doesn’t want to miss out on anything that happens in their lives.
Cheryl is a registered nurse. “The absolute worst thing about this disease is that not a lot of people are educated on it. … When I was in nursing school we literally learned about it for five minutes. It was a paragraph in our book when we did the section on neurology.”
Whenever Cheryl has to go to the emergency room and tell them she has trigeminal neuralgia they tell her they can’t find it in their system so they put her under headache or migraine. “It’s not a migraine. It’s the most ungodly amount of pain you could ever imagine. Some of them look at you like you’re a drug seeker, just there to get a fix. I am there as a last resort!” On one particular day there was nurse who saw her and said she had never heard of trigeminal neuralgia but had just had someone else come in with it. She said they were asking for dilaudid, an opioid, and she wondered if that was a reasonable request. Cheryl responded “This pain is real. It is real!” The nurse was just amazed that she had two patients there with TN and she had never heard of it before. It is in these situations that she tries to raise awareness. “It needs to be made more aware. I love raising awareness for it. I just hope some money starts going to it.”
After three years of living in pain she decided to try surgery. She told her husband “This is how bad this disease is. I am so desperate I am willing to go into brain surgery.” But she was excited because she thought this could be “it”! On September 15, 2014 she had micro vascular decompression surgery. They found that an artery had adhered itself to the nerve. The surgeon was able to scrape the artery off of the nerve and then he put a Teflon pad around the nerve so that another artery wouldn’t or couldn’t do the same thing. She was supposed to be there for three days but was actually in the hospital for 10 days overall (3 days in ICU) with complications.
Her children came to see her after her surgery and she was asleep when they arrived. She awoke hearing her daughter crying. She was staring at the staples in her mother’s bald head behind her right ear. She said “Mommy are you OK? Are you going to be alright?” Although they had talked about it beforehand you just can’t really prepare children for such a thing. Her oldest son didn’t know what to think about it so he wrote his story (his version of her story) for a school project, which helped him to cope. He won First Prize and his story will follow this one, for you to read. He was in fifth grade at the time.
When Cheryl got home from the hospital she had about three weeks of relief. “A little bit of relief” is how she describes it. She was highly medicated and recovery was “just awful. Every time I sat up I would throw up.” Her symptoms returned and at times she thinks her trigeminal neuralgia was worse since she had the surgery. When I asked if there were any benefits at all she responded “No.” She has Type II, which means the pain is constant. And at times it is even worse. Washing her hair, her face, combing her hair, drinking, sweating, all increase the pain. And then there’s all the medicine. She can’t eat yet it makes her gain weight. She hops on the treadmill to work out which starts her sweating and then the sweat rolls down her face.
She started taking trileptal in 2012 and it was new to her. She has had success with it but she also needs baclofen due to her inner ear pain. “The pain is just so deep. Right between my inner ear and the roof of my mouth.”
But again, what makes the pain that much worse is the way it affects her kids. They pick up on how bad she is hurting and it hurts her to know this. When it gets really bad her right eyelid swells shut. Her children will ask “Mom do you need me to get you a heat pack?” or “Can I get you something?” “Do you need anything?” The worst is when they are kids being kids. Her twins will be jumping around and all of the sudden they just stop and freeze. They turn and say “Oh mommy. Is this making your head hurt?” Or when her daughter who has asthma gets coughing hard and makes herself stop to apologize. “Mommy, I’m so sorry. Is this coughing hurting your head?” Cheryl tells her “You are a little girl with asthma. Don’t worry about me. I’m the mom. I need to be worrying about you. Don’t worry about anything you do. I’m worried about you.”
One day she passed out at work, the pain was so horrible. She collapsed and they sent her to the hospital. Her neurologist thought a University doctor might see something he didn’t or have some idea of something else that might work … just to get his opinion and see if there was anything they hadn’t tried. He was good (they said the best!) but when he saw her chart he told her she was on what she needed to be. That her best bet was pain management and since there is no cure so, basically, this is your life. Just go day by day with the pain management drugs. When she went back to her neurologist because she was having more symptoms she was told she was no longer a patient since she went to another doctor (whom he recommended). That was quite a surprise to her as she found herself without a neurologist to work with. He general doctor has since taken over and doses her trileptal. He works with her; he believes her pain and he has become a good friend. But she still can’t believe the other one just let her go after all they had been through together.
For Trigeminal Neuralgia Awareness Day on October 7, 2015, the Belleville News Democrat newspaper did a story on Cheryl. It is in a bigger town next to hers. She just really wants to raise awareness! She sells shirts with Trigeminal Neuralgia on them and donates the proceeds to the Facial Pain Research Foundation. She also wears them so people will ask her what it is so she can tell them about it and that she sells them to raise funds for research. She has had people stop and say to her “I have that too.” She loves to raise awareness of it.
Her husband has been a colossal help. She hasn’t done the laundry in at least six years because it is too painful to bend over. When he would have a headache or a toothache he would ask her “Babe, how do you do this every day?” Now he just asks it out of the blue. She says “You do what you have to. It affects every single day of your life. There’s just not a day without pain. It’s ‘How bad is it going to be today?’ ‘Is it a day I can even get out of bed?’ Or is it I’m going to be in the middle of doing stuff and I just have to get through that. Luckily I have an awesome support system. … I think if it wasn’t for my family there would be a lot more days in bed.”
Although Cheryl has tried acupuncture and a number of other things, people always seem to have some advice to give of some thing new she should try. She says she is scared to try anything because she doesn’t want it to get worse. She can’t imagine being in any more pain than she is in now and she is not willing to take that chance.
She worries that she is stealing her children’s childhood; that her pain is affecting them in some negative way. “You just try to be as happy as you can and not let your kids see the tears. They worry about me so much and I don’t want them to. I want them to just be happy kids and not tell their friends when they come over to not be too loud cause ‘I don’t want to hurt my mom’s head.’ I don’t want that. I don’t want them to look back on their childhood and say ‘my gosh, mom was sick all the time.’ She never used to miss anything but this past year has gotten so bad that she had to miss things. Her children say “I get it. I get it Mom.”
“Luckily I have a job where they are understanding. I’m an administrative nurse. I do scheduling and a lot of paperwork and just make sure that all goes well. I’ve been at my job for 20 years. I started in the kitchen and I worked my way up to Nursing Director. If it wasn’t for them I wouldn’t have a job. They know when I’m not feeling good. They’ll say ‘Go home! Go work from home.’ There are some days I can’t even sit upright in a chair.” When she thinks “I can’t do this anymore” she recalls how “I busted my ass to get through nursing school. It was HARD. I haven’t been doing all this work for Trigeminal Neuralgia to rob me of my medicine career. Something I’ve been wanting to do forever.”
When asked what she would say to someone who just had that jolt of pain for the first time she said first to find a medicine regimen that works for you. Don’t be afraid to stand up to your doctor. If you can’t find agreement with him or her find a new one. Definitely join a few support groups on Facebook. Get involved and raise awareness.
“By all means possible take the negative and turn it into a positive.”
Carter’s First Prize Story in Fifth Grade
Webster's Dictionary defines "incurable" as "not likely to be changed" but my life and my family's life (especially my mom's life) has changed in so many ways in the last 5 years. My mom has a rare and incurable disease called trigeminal neuralgia and this is her fight and our family's journey.
This all started one morning when she woke up. When she woke up she had horrible facial pain. She tried taking medicine like ibuprofen and Tylenol but nothing helped. After a couple days she still had pain so my dad took her to the ER and the doctors just didn't know what to do. They decided it would be best for my dad to take her to the ear, nose, and throat doctor. I was very confused why they weren't just taking her to another hospital. During this time I was just ... confused. I barely knew what was going on and why she was having this pain. When she came home from the doctor they said that she needs to see her dentist.
That evening she got into the dentist. After examining her he determined that there was no problem with the gums or teeth that would cause her any pain. The dentist said that she just needed to go see her doctor. She has seen him for many years and she trusts him.
The next day my mom was able to get in to see him, my mom explained to him that she was in such bad pain she couldn't bear it. She described her pain to him and she said "if you drew a line down the center of my face, it's the entire right side of my face that is in horrible pain, especially the inner ear and the roof of my mouth". She then went on to tell him about how she couldn't sleep and walked around our house at night because she couldn't sleep because she was hurting so bad. He looked at her and said, "I'm afraid you have trigeminal neuralgia". They talked about different medicines she could take to reduce her symptoms, there is no cure for the disease but there are medications that can reduce some of the pain and other symptoms such as relaxing the nerve. He prescribed medicine for her that people with seizure disorders take. He told her that she should try to find a neurologist. Prior to her first visit with her new neurologist my mom was admitted to the hospital for some pain management. During her hospitalization, she was given steroids and pain medicine and she finally felt some relief. She remained in the hospital for a few days and she was released with orders to see a neurologist.
Within the week my mom went to see what would be the first of 6 neurologists. All the different medicines he was trying with her made her very tired and it was hard for her to do anything and she slept most the time. Every time she told him that she was in pain he increased her medications. After going back and forth with that doctor many times and disagreeing about treatment my mom went to look for another doctor. The next doctor she saw suggested she have a treatment done called "gamma knife" this is a very precise radiation treatment that is focused on one small area. The doctor wanted to do this treatment to directly access the trigeminal nerve to attempt to numb the pain or at least decrease it. After a lot of testing they said she wasn't a candidate for the gamma knife treatment. It seemed like she would get so excited only to be disappointed, sometimes it was hard to see her so upset. This doctor referred my mom to another doctor across the river.
I remember my mom came home very upset from this appointment, the doctor was very short with her and would not listen to all of her symptoms. This doctor wouldn't give her time to tell her story and he pretty well just blew her off and wouldn't allow my mom the chance to speak. He did at least order an MRI to look for any abnormalities which came back
OK and that was frustrating also, she didn't want anything bad to show up but she did want some answers. So that was another doctor gone which left her with no doctor.
There were few other neurologists that she saw that were also oneappointment doctors. Even though all this was so frustrating she was always happy. Between Mid 2013 to August 2014 my mom was in the hospital about every other month. These times were the hardest and I would miss my mom so much. We would go to the hospital to visit and dad would say "I know this is hard guys but please don't cry in front of your mom it may upset your mom more" and when we got to the hospital we could tell mom was being strong even though I could tell she was in pain and was missing us. Mom would smile, hug us, and ask about our days and school and our activities. It was hard not to get sad or scared when I saw the IV's and monitors hooked up to her.
One good thing did come from all these times in the hospital, she found a really good neurologist and she really liked him. He helped her find new medications with few side effects which was good for us because she wasn't as tired and could do more stuff with us. After many more times in the hospital, he introduced my mom to a neurosurgeon he worked with. He was also very nice and wanted to help, the first time he met her he said, "don't cry I'm going to help you". My mom came home excited that she had found a doctor that would help. In august 2014, after being in the hospital again, she decided to go in and have brain surgery.
According to my mom what the doctor was going to do was to go into her skull and the brain and look at the nerves that come out of the spinal cord and look at the trigeminal nerve and see what was going on. The doctor would look and see if there was anything touching the nerve and if there was he would move it away so the nerve wouldn't be affected and that would hopefully stop all the pain.
The surgery was very scary for mom but just as scary for me and dad. Bradyn and Caitlyn were too young to understand. Just hearing brain surgery is scary, mom and dad tried to act like it wasn't a big deal. My mom was supposed to only be gone for three days. My brother, sister and I stayed at my grandma and grandpas house. They tried to keep things as normal as possible like there was nothing going on but we missed mom, dad, our pets and our home. Mom and dad ended up being gone for 10 days, we got to see her one time while she was at the hospital. We walked into her room and it was really scary for us, she was hooked up to all kinds of wires and tubes, they had shaved part of her hair off and there was a row of staples in her head. We were very nervous to go by the bed but so happy to see her. She was happy to see us but she was in a lot of pain. My mom's nurse and pain management doctor had heard so many stories about us that they had presents ready for us, they gave us a bag with candy and a book that had an invisible ink pen, her doctor made us balloons with smiley faces made out of the gloves that the doctors and nurses wear. I felt better about my mom being there after seeing how nice the people were that were caring for her.
When my mom came home she was having a very hard time, her pain was still very bad, she kept telling us that it was going to be okay because she was getting better. Mom spent about two weeks in bed before she could start moving around the house. It was so great having her home because even though she was in bed we could see her every day. So many people were helping us out, I couldn't believe all of the people coming by to bring us dinner and they always brought dessert too! Mom and I would watch movies in her room even when she was not feeling well, just had to make sure not to move the bed too much because it would hurt her head too much. It was a hard time but we were doing good because we were all together, we were just ready for her to feel better and get back to how she was four years ago.
I am sad to say that never happened, mom even says sometimes she thinks the surgery actually made it worse. My mom saw another neurosurgeon to see if anything else could be done and he told her there was no cure for this disease and she has a rare type of trigeminal neuralgia and all she can do is have help dealing with the pain.
My mom took this bad news and turned it into a good thing by teaching others about her disease. Last October the Belleville News Democrat put a story in their paper about my mom, they came to the house and talked to her and put it in the paper. Mom has also been raising money to give to the people that research cures. My mom makes me proud, it is hard seeing her in pain but no matter what is going on she is always there for me and my brother and sister.
The Facial Pain Research Foundation
Salutes Our Thousands of Volunteers
The Facial Pain Research Foundation is fortunate to have had thousands of Volunteers assist in the raising of funds for its Research Projects to cure Trigeminal Neuralgia and related neuropathic pain. The following article written by Karla Gudgeon in the UK is a wonderful example of someone in pain “fighting” to help others to end the pain. We truly appreciate all of the Volunteers and their efforts on behalf of the FPRF.
Michael Pasternak, FPRF Founding Trustee
A Holiday Message from Karla Gudgeon
Hello again from England! Some of you have probably heard of me from past articles. My name is Karla, nicknamed Athena and I have had TN for nearly a decade, since I was 18. It's been an awful year in many ways, not least because I seem to be getting TN on my other side now as well, something I have dreaded. But do not fear - this is a positive article. The theme of this article is that you may not reach your dreams the way you intend; life may not go as planned, but sometimes things work out anyway in ways you could never have imagined.
As some of you know I run Child of Athena Crafts, selling wooden pyrography items, cards, and official FPRF merchandise, with all the profits going to the FPRF - feel free to check out my page on Facebook and see what I do! I also collect loose change and do other fundraising activities. Well I have just calculated the fundraising totals for 2018 and I was astonished to find out that they came to at least £2000 ($2500) when everything was taken into account. £510 of this was from a sponsored challenge, the rest is from my merchandise, loose change and other activities. I also sell items down at a local Garden Centre. Some of the money paid for the materials to send a large shipment of cards and merchandise to Florida, where hopefully it will be turned into even more funds and awareness!
Firstly then, an update on the sponsored challenge - some of you will already know that two years ago I decided to undertake ten sponsored challenges, on horseback, set by my instructor to be at a difficult but attainable level. Horse riding is a great love for me, but is very difficult for me as the pain from my TN makes me pass out unconscious about 30-50 times a day, or whenever an attack is triggered, you know like by doing exercise or being out in the cold! I also have Ehlers Danlos which makes me dislocate and sprain joints all of the time. The challenges included cantering a full circuit on both reins, turning on the forehand, and a selection of agility and control based exercises. One challenge (reversing) did have to be exchanged as I simply couldn't do it without dislocating several joints due to my Ehlers Danlos. We exchanged this for a full spiral in trot on both reins followed by a circle in trot with no stirrups, on both reins. Eventually though Amos and I completed our ten challenges - I collected the money, he would rather have 510 carrots. He's a wonderful pony though - every time I pass out he just stands patiently and won't leave until I'm back around - even if I'm still on the floor, as long as I'm conscious!
Secondly the merchandise - I have moved away from cards and more into pyrography this year, and am improving all the time, learning new techniques. I still make cards, and the merchandise as well of course, but pyrography is my main love. Please pop over to Child of Athena Crafts on Facebook to see what I make, or check out my items on Conscious Crafties website (https://www.consciouscrafties.com/crafties/child-of-athena-crafts/). More items are being listed gradually. My Mum, who had to give up work to care for me also makes dreamcatchers, a remnant from my childhood nightmares which she has recently got back doing.
Finally, and nothing illustrates my point about dreams coming true better than this. Over the year I have been asked to play Princess Belle at various charity and community events. Over the year this has evolved somewhat - although I do not get paid for this I love doing it as a way to give something back to the community and make some children (from all walks of life, of different ages, some very ill) so happy. To me that is true magic, and a truly humbling thought to know you can make such a difference to a child, just by being there and talking to them. Now to tell a story - twenty two years ago a little six year old girl visited Disney Land in Florida. I was allowed to choose one dress - I chose Belle, my favorite princess as she was so like me. She didn't fit in, wanted adventure and loved her books. Now ironically that same holiday I damaged my ankle and had to be carried around or use a wheelchair - little did we know that it was a sign of things to come. Now fast forward a few years and I dreamed of having a few years off after uni and being a princess there for real... that wasn't to be due to my health of course. Ironically though, by being ill, I've ended up accidentally falling into doing something very similar! Either way I attained a dream, just not necessarily in the way I expected. Its a lot of effort, and I have to take very high morphine to make sure I absolutely never pass out when in character but the smiles on the children's faces make all the pain and effort worth it.
So with that in mind, TN has taken my freedom, my masters and phD, my driving license and in places my dignity. But it will not take my dreams, because even if you can't attain them the way you expect, with a little modification they can still come true!
So thank you to Michael and all the FPRF for that most precious gift of all - hope.
Merry Christmas and a Happy New Year
Your TN Princess, Athena.
THANK YOU PAT AND AMY TOMASULO
AND CHICAGO
LAUGH YOUR FACE OFF Has RAISED OVER $1,200,000!!!
By Kris Gaganidze
The Fourth Annual LAUGH YOUR FACE OFF was held May 8, 2018 in Chicago’s beautiful neighborhood of Lincoln Park at the Park West. This marks a new date and a new bigger venue! All of this helped to make this year’s LAUGH YOUR FACE OFF a huge success. With temperatures in the high 70’s and a beautiful sunshine day to come out and help support The Facial Pain Research Foundation (FPRF) in their fight to find a cure for Trigeminal Neuralgia (TN).
To date LAUGH YOUR FACE OFF has raised over 1.2 million dollars for research for a cure for the rare nerve disorder called Trigeminal Neuralgia. The Foundation is currently funding six different research programs to find a cure for Trigeminal Neuralgia. TN is known to be one of the most painful conditions known to humans. It is often called the suicide disease because there is no known cause and no cure.
My husband, Kyr and I had the great pleasure of meeting Michael Pasternak six years ago. He is one of the people who started the Foundation looking for a cure. We got involved with Pat and Amy Tomasulo four years ago when we were asked to help with LYFO. What an honor to get to work with and know these amazing people. They are the brains and Founders of the brilliant LAUGH YOUR FACE OFF! This year’s LAUGH YOUR FACE OFF took place at the Park West Chicago. The venue was twice the size that we’ve had in the past. So over twice the number of people (700) attended Saturday’s event. The evening started with cocktails, appetizers, silent auction and raffle!
My husband and I had the privilege of checking in VIP guests, sponsors and TN patients. What a joy to thank our sponsors personally and give hugs to TN patients as they entered the event.There was a separate raffle set up just for the TN patients. I think they appreciated the thoughtfulness of a special raffle just for them! And a huge shout out to all of the returning and new sponsors! We appreciate your generosity and support!
The evening started with the very funny Pat Tomasulo warming up the audience with his great standup comedy. After Pat got the crowd laughing we never stopped. He was followed by five, yes five great standup comics. Thank you to Rocky Laporte, Brian Smith, Jeannie Doogan, Drew Frees and Mike Stanley.
Next, the beautiful Amy Tomasulo read the raffle winners, which was exciting for all of the winners of those amazing packages!
Followed by two special videos of TN patients, which gave us deep insight and understanding into the daily toll that TN takes on a person’s quality of life. It’s amazing to see the impact on the audience that those videos made. It was emotional, inspiring and heartbreaking. These two brave TN warriors brought tears to many people.
Then the big give which raised twenty five thousand nine hundred dollars in a matter of minutes! I continue to be astounded by how generous people are.
LAUGH YOUR FACE OFF an event where I was surrounded by friends, family, doctors, scientists, TN patients and many supporters. Everyone was there for a reason, to find a cure for Trigeminal Neuralgia. Every person I met that evening truly cares about the patients and supporting the research for a cure. LAUGH YOUR FACE OFF is a huge success because of all the people who show up to show that they care. Thank you for a beautiful night that gives each and every TN patient hope for a better tomorrow.
Why Is Research
Important
By Kenneth Casey M.D., FACS
Clinical Associate Professor of Surgery (Neurosurgery) Michigan State University SOM
Clinical Associate Professor of PM&R Wayne State University SOM
Surgical Director Intensive Care Oakwood Southshore
Have you ever gotten up in the morning and been very excited about the prospects for the day? You’ve have a new friend to meet or you’re going on a trip to an area you’ve never been or you’re going to revisit and reconnect with an old friend. All these are exciting because something new is going to happen, something different, and you’re going to come away with new feelings and different perspectives. Research is exactly like that. The origin of the word from the old French says exactly that, that you’re going to look very intensively for something( Old Fr. recherche).
Researchers get involved because they get excited about something that’s not known or something that’s not completely explained and they dedicate literally years of their lives, days of their weeks, and hours of their days trying to find these bits of information. What’s even more fun for a researcher though, is finding other pieces of information, little sidebars as it were, that were not known before. These sidebars are important ,not as a detour, but as an increasing amount of knowledge that’s adding to the general fund of things we know and things we can work with in our lives. People talk about the fact that research is important in medicine because it makes it possible for some cures or some improved treatments and that’s certainly the case with the Facial Pain Research Foundation. It means much more than that because if we can find how something works, whether it be something in our own body or something outside our body in the atmosphere or something outside ourselves beyond the planet, we’re going to be that much richer for the experience. We also know that research allows us to understand several sides of a given question.
For years the world was flat and everyone believed you could sail off the end. Researchers and explorers showed that based on their calculations from the time of Galileo and da Vinci to the times of Columbus and other explorers that that’s not true. It is a circle of land, water, and people. The world exists as a collected community. Research can provide truth and put paid to certain mistruths or errors in knowledge that may hold us back and may stop us from going in the right directions. It’s a way to support day to day life and to support fundamental truth.
Research offers us all an opportunity to pursue more each day when we get up and when a researcher puts together a hypothesis and begins the steps to take that hypothesis piece by piece and develop it into a theory and the theory translates into practice, every single one of us will benefit.
Research is important because we go back and search again through what’s happened and look again at what has already been written down and done and with a very critical eye and an unparalleled intensity, we ask what more can we do, what more can we accomplish, what more can we learn.
Mervyn Rothstein
Interviews
Douglas K. Anderson, Ph.D.
In 2018 Douglas K. Anderson was the recipient of the US Congressional Certificate of Recognition and The University of Florida McKnight Brain Institute established the Douglas K. Anderson Facial Pain Research Program to fund future research to find cures for TN and neuropathic pain.
Douglas K. Anderson, Ph.D., is eminent scholar professor and chair emeritus of the Department of Neuroscience at the University of Florida, College of Medicine, former director of the McKnight Brain Institute at the University of Florida. He is director of research and a trustee of the Facial Pain Research Foundation. He was interviewed by Mervyn Rothstein, who was a writer and editor at The New York Times for nearly 30 years and now writes the Stage Directions column – a series of interviews with theater directors – for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005
Why did you want to be a scientist, and how did you become one?
I had a cousin who was a physician, and he kept after me to go into medicine, saying we would go into practice together. So between my junior and senior year at the University of Texas I got a summer internship at MD Anderson Hospital in Houston, which is a world-class cancer hospital. I was there for about three months, and about a month into it I realized that if I had to make a living as a doctor I would starve to death, because it was difficult for me to work with sick people. I was dealing with pediatric cancer cases and I would go home and cry. But I had spent about half my time working in the research laboratory, and I loved the lab. So I went back to school and changed my major from zoology pre-med to straight zoology. I didn’t tell my parents until Christmas – which was an interesting Christmas. And I went back to Anderson Hospital after I graduated and worked with a Ph.D. instead of an M.D. I got my masters at the University of Houston, and my Ph.D. at Michigan State in 1972.
You worked for 33 years for the Veterans Administration. What kind of work did you do?
I was there from 1973 until I retired in 2006. The V.A. was very good about allowing us to have appointments at medical schools, so I had a dual appointment. I was working on spinal cord injury both with my academic appointments and at the V.A. I was for a year the Department of Veterans Affairs Deputy Director of Medical Research.
Why after more than 30 years of researching spinal cord injury did you decide to turn your efforts to finding a cure for trigeminal neuralgia?
The main reason was that spinal cord injury was so complex, because the spinal cord is so complex. We were working on locomotor function – movement – which is an incredibly difficult thing to do. Spinal cord injury is a constellation of symptoms – bladder function, sexual function, pain, temperature regulation, so many things. So I decided that instead of trying to hit a home run, I would go after a bunt single. One of the major complaints most spinal cord patients have is pain, and all scientists generally in a situation like that look for the simplest model. I’m not saying that trigeminal neuralgia is a simple model, but relative to spinal cord injury it is. One nerve, a big nerve, and the pain is in that nerve. I became interested in mechanisms and the patho-physiology of pain.
How is the Facial Pain Research Foundation unique from other research organizations?
We try to keep the bureaucracy at a minimum. We try to keep, while diversified, the number of projects we fund to maybe four, five, six at the most. We have a purely volunteer organization. Nobody gets paid anything. Our scientists don’t get paid. Our Trustees don’t get paid. Our support staff doesn’t get paid. I don’t get paid. Ninety-five percent of the money that comes in goes directly to the researchers for the research. I try to look for the best people in their field in the world to work for us. And to work with us.
How were you able to attract top researchers in the world to such a small foundation?
Instead of having them submit a grant, we say, this is what you’ve been doing, give me something we can hang a hat on, then go and do what you think will be exciting. So instead of their having to deal with a bureaucracy and submitting a grant every six months or a year, we, on a small scale, give them the money quickly, give them their leeway and see what they can do. I call this “money with soul.” This is money given by people directly. This is not some faceless National Institutes of Health grant given with your taxpayer dollars.
You were chairman of a prestigious neuroscience department and director of the McKnight Brain Institute. Why is the Facial Pain Foundation’s research so important to you? Is it in part because a solution to neuropathic facial pain would also help provide scientific answers for multiple sclerosis, epilepsy, back pain, and other neuropathic pain?
Yes. I think it has a chance of making a difference. Mother Nature in my opinion is very conservative. The neurotransmitters in the gut are very similar to those in the brain, except you have different receptors and they work in a slightly different way. I look at this, and I think other people do too, as hopefully being sort of a Rosetta stone for pain, for neuropathic pain. Fundamental mechanisms are involved, and I think we can have a broader effect than just trigeminal neuralgia, also maybe diabetic pain and other pains. I think this research has a chance to be bigger than what you might expect it be.
How difficult is it to describe the science and the research to nonscientists?
For me, it is not too difficult. I’ve dealt closely in spinal cord injury and now in trigeminal neuralgia with the patient population we’re serving. I’ve always felt it was important to go to them and try to explain what we’re doing. I just hope that when I simplify it for lay people I’m not overdoing it so that I’m giving them incomplete or false information.
At the beginning of 2011, the foundation set a goal of finding cures within ten years of establishing its research program. At a minimum, what do you hope to accomplish before the end of 2020?
I’m hoping we will have a handful of genes or one gene we can hand off to others to test, and do animal studies and see if we can chart models of neuropathic pain by using the gene or the constellation of genes working together. To see if we have pain because they’re not working together, or we have pain because they’re overworking. Also, at the very minimum we hope we will have done human tracking with MRIs to chart the pain pathways that are involved, and locate the pain signal from the nerve to the brain, to where the brain can process it. And once you have that, then you have targets to do your intervention, do your injections. When you see which pathways are involved, you can define the neurotransmitters, so you can attack it that way. We are also hoping that the gene people will have solid data on how complex the gene interactions are – which is the alpha dog gene, or if there is an alpha dog gene, and how the genes interact.
You wrote the following Facial Pain Research Foundation mission statement:
“The Facial Pain Research Foundation is to establish a well funded translational research continuum that is dedicated to identifying the mechanisms underlying neuropathic facial pain and to developing groundbreaking therapeutic strategies that will permanently stop the pain of TN and related neuropathic pain syndromes.”
In your opinion, how are the foundation, its scientists, trustees and volunteers doing in relationship to its purposes and goals?
I think we’re doing fantastic, and I’m not someone prone to hyperbole. I’m very careful. I never would have dreamed in 2011 when we had zero dollars that we would now have collected a little more than $4 million. That $4 million has had a multiplier effect and raised even more funds for the research. I find that to be phenomenal. I think we are doing and our scientists are doing a wonderful job and making strong progress. I’m gratified and surprised that we have done as much as we have done in the period we have been in existence.
Editors Note: Hanna Smith is a contributing writer for the Facial Pain Research Foundation. She is an award-winning journalist and assistant author of an in-progress medical biography detailing life with chronic pain. A student of bioclinical science, Smith studies surgical technology, psychology, physiology, and neurobiology to specialize in the medical treatment of individuals with disorders such as Trigeminal Neuralgia. Her father, diagnosed with Type-I TN for 26 years, inspired her to be dedicated to and engaged in the awareness, research, and medical practices that change the lives of people with chronic pain.
Shelly Forster:
The Purpose of Pain
Shelly with her family
By Hanna Smith
It was Shelly Forster’s most burning question: What is my purpose?
Fighting through reconciling the logistics of her new life diagnosed with chronic pain, rock bottom became her home in 2008 – and it left her with a choice.
2008 is the year Forster underwent two brain surgeries and was diagnosed with three chronic pain disorders – oral mandibular dystonia, trigeminal neuralgia and tardive dyskinesia – all of which transformed her from an independent woman working in nuclear engineering to a homebound patient fighting for her life.
“Pain is the great debilitator,” Forster said. “Chronic pain is a different animal all together, but takes on a new, terrifying element when it’s neurological.”
A congenital tumor inside Forster’s cerebellum was the root of her startling symptoms – muscular contractions in her neck, loss of voluntary control of her jaw and tongue, and splitting migraines.
For some time prior, Forster attributed the consistent headache and preliminary symptoms to stress at her job as a document control specialist for a nuclear engineering company. Such a job often required 70-hour weeks with round-the-clock hours. Forster assumed her symptoms to be somewhat normal considering the abnormal circumstances.
However, when the pain worsened and ultra-abnormal symptoms arose, she sought medical attention. Forster walked out of the doctor’s office with an emergency brain surgery scheduled the next day to remove the tumor inside around her cerebellum – the brain’s motor control center, which explained the involuntary movements in the cervical region of her head.
Dystonia impacts approximately 250,000 people in the United States, according to the American Association of Neurological Surgeons. Despite it being the third most common movement disorder, it is widely un-recognized by the public.
Forster underwent a surgery which removed the tumor. She was able to go home and began the recovery process. However, during a follow-up appointment, an additional MRI revealed there was a secondary tumor – this time woven within her cerebellum.
Forster for the second time was scheduled for emergency surgery, during which the surgeon filleted her cerebellum to remove as much of the tumor as possible. By the time the surgery was finished, however, 20 percent of the tumor was untouchable and too entangled in nerves. This portion still remains in Forster’s cerebellum to this day.
Prior to the operations, Forster says she understood her painful symptoms were in direct correlation with the tumors. Thus, following the surgical removal, she also assumed, based on medical opinion, that those symptoms would disappear.
Reality, however, did not meet those expectations.
Because of the neural damage coupled with the manipulation of the cerebellum during the procedures, Forster was left with permanent damage that resulted in her ongoing diagnosis of TN, dystonia, and tardive dyskinesia. It took visits to approximately four doctors before she was properly diagnosed.
THE FIRST THREE YEARS
With fluctuating medical treatments as doctors attempted to find a perfect medicinal cocktail to treat her pain – all the while attempting to acclimate to these new doses – Forster remembers the first three years of her illness as a fog.
During that time, she kept journals. Always a writer since childhood, putting her thoughts – no matter how jumbled – on paper helped her express and sort the emotions jostling through her mind.
“I took notes. I wrote things down about how I felt and what I was thinking – my faith and family and the roles both played,” she said. “I wrote down the good and the bad.”
Many days, Forster’s pain levels were off the charts and she was unable to function. It was during this time that she asked the pivotal question which determined the rest of her life: What’s my purpose?
Finding a purpose in the pain, she said, was the key for her survival by developing psychological motivation which would bolster her physical perseverance.
A wife, mother of three and now grandmother of three, Forster says she didn’t have to look far. Additionally, she began to recognize the unique position her illnesses put her in. Forster said this made her feel responsible for sharing her story with others – with the end goal of letting people with chronic pain know they’re not alone.
Fighting for her health meant fighting for her family and for others in similar situations.
Forster clearly found her purpose.
“It’s easy to accept your situation and move on,” she said. “But when you start paying attention to the battle and educate yourself, you’ll increase your quality of life.”
THE OTHER SIDE
Amid the turmoil of the first three years, a precedent was set in many facets of Forster’s life – experiences which developed the dynamics of what would become her new normal.
“I was able to discover trends,” she said. “I put a magnifying glass over the truth.”
Some relationships were lost. And although those years are met with what she says are some regrets, she knows the Shelly Forster of that time was often not reflective of her true character. During those times, pain sometimes spoke louder.
“It’s OK to walk away from relationships, no matter who they are, if that person cannot support them during their darkest moments,” she said. “We need to be relieved from that accountability.”
On the other hand, however, she says she knows the lost relationships proved who would stand by her side through the worst time of her life – and who couldn’t or wouldn’t. From that point, she established her core team of reliable people who became her baseline for support.
“When pain begins to define relationships, you are beginning to find out what other people are made of,” she said. “It’s the recognition that, because pain is part of my everyday life, those people are the ones that I need to walk away from for my benefit.”
Forster also established a core medical team. Because of the rarity of her disorders, she was referred to medical specialists, many of whom were considered cutting edge in their fields. But, being cutting edge, she discovered, did not equally entail compassion and willingness to advocate for patients. Through this realization, Forster learned to advocate for herself – even if it meant cutting off ties with doctors whom did not have her best interest in mind or were unwilling to help in her fight for her life.
This journey ultimately landed her at the Rochester, Minnesota-based Mayo Clinic, where she began undergoing botulinum toxin injections. According to The Dystonia Society, BTX treatment injects Botox directly into the targeted muscle which is impacted by dystonic activity. Although botulinum toxin is toxic in purified and controlled doses, it can help to relax muscular activity.
At the Mayo Clinic, Forster was treated by now-retired Dr. Joseph Matsumoto, who every three months typically administered 12 injections into her cervical muscles. The needles, approximately 30-gauge, are connected to a monitoring machine which judges the muscular-contraction activity at the time of injection with an auditory response. Always, the machine is buzzing at high volume when the needles are inserted. Forster’s husband Tom said sometimes he can see the needle bend slightly as it attempts to pierce the muscle.
Her daily companion for treatment is the pill box – containing pills assisting with pain relief, muscle relaxers, antispasmodics, blood pressure for hypertension linked to pain, and anti anxiety. Creating this fine-tuned cocktail took 10 years, and Forster said it still changes periodically as new medications are produced. It’s all trial and error.
NEW NORMAL
For all the absurdities and abnormalities in her life, Forster recognized trends and patterns – details that made her world a better environment. She learned her body’s unique responses to treatments or the lack thereof. Mitigating stress and being selective regarding which social interactions were most pertinent allowed her to venture from home without facing devastating impacts.
“What I’m going through is overwhelming enough,” Forster said. “I’m just getting through this moment. And not just get through. I’m trying to live this moment. Chronic pain patients need to know there’s life.”
Moving forward in this mindset, Forster said she’ll often plan ahead when she knows there is an important event she wants to attend – such as her grandson’s birthday party. In the days leading up to the event, Forster will rest more frequently and ensure she’s medicated properly.
Forster continued to write. This time, however, it was tracking her knowledge, medical progression, and jotting down pieces of inspiration that ignited fire in her fight for life. From psychology to medical management, Forster began to formulate her new normal.
At the same time, her purpose of pain began to grow arms and legs – and a plan came into focus. Forster fell back on her writing abilities, ultimately beginning work on a medical biography to share her story and gained knowledge to assist others who need direction in learning how to find a new normal after a chronic pain diagnosis.
Looking back, Forster recalls the many dark days when she considered what her purpose was. But, today, she is grateful to be alive with her purpose living and growing around her in the form of family and advocacy for others.
“The dark days behind me taught that the dark days to come are survivable,” she said. “Every time you have to apply that strength, it means you’ve got it in you for the next time.”
Hi,
I came across this website friday 29th June 2012. I have been researching for around two years now in regards to what could be the cause of my sons sudden pain in his cheek and forehead. My son is called riley, around the age of two riley started with funny episodes where he would get facial pain in his cheek and head. This made him sick on several occasions, he would also sleep for sometime after the episodes.
Riley has been under his paediatrician since they started who thought possible seizures was the cause. Riley has had EEG, ECH metabolic blood tests and urine samples. All were reported as satisfactory. Riley's last appointment was on Monday 11th June 2012 which his paediatrician left us with no answers and asked us just to keep my son off his wii and see how he goes. He was also discharged, so we was still left in the dark. On Friday 29th of June riley woke crying in pain around 11pm we gave him paracetamol. He cried for around 30-40 minutes, in pain holding his cheek.
Asked me "mum why does this keep happening to me" his voice desperate for answers. Riley was 5 in January, this has gone on for some time now and we are still left with no answers. Having to explain to my 5 year old son that I don't know is just not the answer. I sat frantically trying to research Riley's symptoms on the Friday night. I came across this site where I found a story called Emily's story. Emily's story sounds exactly the same as Riley's.
Riley's and Emily's symptoms are very much the same. I have now written to my sons paediatrician with details so hopefully they can look into TN, I would appreciate any information or advice you can give me. I'm desperate for some answers as I can't stand seeing my son like this any longer.
Thank you for taking your time to read my email.
The Facial Pain Research Foundation
Board Of Trustees
Founding Trustees
Myron A. Hirsch, Ph.B., an author, editor and book publisher, founded Whitehall Printing Company (a book manufacturer) in 1959. The company prints thousands of books each year, including educational books on neuropathic facial pain for patients and their families, as well as health-care professionals. Hirsch also is editor-in-chief and publisher for Collage Books Inc. He is championing efforts to find a cure out of passionate concerns for his wife, Harriet, who experienced a return of trigeminal neuralgia in August 2010 after enjoying many pain-free years resulting from a Gamma Knife® procedure. He is a former president of the TNA-FPA, and was an active board member for 8 years. He and Harriet live in Naples Florida. Today Harriet is again pain-free.
Roger L. Levy, Esq., LLM, AIFA®, is a former attorney now serving as CEO of Cambridge Fiduciary Services LLC, a fiduciary consulting firm based in Scottsdale, AZ. Educated in England, he practiced law in London and was a partner in Taylor & Humbert, one of England’s oldest law firms, before immigrating to the United States in 1975 where he joined Saul Ewing Remick & Saul in Philadelphia. He holds a Master’s degree from Temple Law School.
Levy became an international spokesperson for the cause of trigeminal neuralgia for a compelling personal reason. For eight years, he suffered “in a wilderness of pain” that shut down his career and forced him into a dark corner of silence. When his pain was finally ended in 1997 through microvascular decompression surgery, he became an active volunteer with the TNA-FPA and Chairman of its Board from 2000 to 2013. He has continually championed the need to find a cure. He and his wife, Maddie, live in Scottsdale. Emeritus.
Michael Pasternak, Ph.D., an entrepreneur who co-founded the world’s largest retail hosiery company, started a Trigeminal Neuralgia Association support group in Nashville, Tenn. after suffering with trigeminal neuralgia. He later left the corporate world and became a board member and subsequently president of the TNA-FPA. He coordinated the association’s early national conferences for health professionals and patients, and helped it develop patient materials, support groups and a patient registry. Prior to his business career, he served as a professor at Vanderbilt University, the University of North Carolina and Michigan State University where he taught courses in Understanding and Improving Organizations and Leadership. Pasternak underwent successful microvascular decompression surgery for TN in 1992, and remains pain-free today. He and his wife, Sherrilyn, live in Gainesville Florida.
As a Founding Trustee of The Facial Pain Research Foundation Michael is focused full-time on the Foundation’s research, fund-raising, and organizational activities. Michael and his wife Sherrilyn enjoy their ten grandchildren, agility dogs, and travel.
Trustees
Douglas K. Anderson, Ph.D., Eminent scholar professor and chairman emeritus of neuroscience at the University Of Florida, College Of Medicine (UFCOM) and McKnight Brain Institute (MBI). As Director of Research of the Facial Pain Research Foundation (FPRF) Dr. Anderson has been responsible for setting the research priorities of the FPRF by selecting five diverse,
novel projects to fill out its research portfolio. Dr. Anderson is known for his pioneering laboratory research that led to the nation’s first implantation of human embryonic nerve tissue in eight patients with a specific complication of spinal cord injury in order to establish the safety and feasibility of nerve tissue transplantation in humans. Prior to his transplantation studies,
Dr. Anderson contributed significantly to the development of the first frontline medication for acute spinal cord injury. A graduate of Michigan State University, he was selected to be a senior research career scientist with the Department of Veterans Affairs in addition to serving 10 years as chairman of the Department of Neuroscience at the UFCOM and interim
executive director of the MBI for a year prior to his retirement. He and his wife, Beth, live in Gainesville, FL. and in Carmel, IN.
Richard Baron, Esq., since 1980, has been the managing principal of the Law Firm of Richard Baron & Associates. With almost 40 years of litigation experience in the Federal and State Courts throughout Florida, Mr. Baron has tried hundreds of cases dealing with commercial and transactional matters, family law matters, Florida Bar disciplinary matters, and criminal matters. Mr. Baron has been appointed numerous times as a Guardian Ad Litem to assist Family Court Judges in difficult cases with alcohol and drug issues and was honored by the Eleventh Judicial Circuit as the “Guardian ad Litem of the Year” in 2009. In addition, Mr. Baron has argued many cased before the Supreme Court of Florida. He has experienced the pain of trigeminal neuralgia and for many years was a Director of FPA-The Facial Pain Association.
Daniel P. DiCaro has extensive business experience as an executive in several public and private companies. With those companies, he has been a member of the Board of Directors and/or has been responsible in various roles for all aspects of executive level management including areas such as product and business development, finance and operations. He has a strong background in corporate finance, mergers and acquisitions, private equity and venture capital financing. He most recently served as an Operating Director of City Capital Advisors, an investment and merchant banking advisory firm starting in 2006 before stepping aside for health reasons in 2013. He has experienced trigeminal neuralgia and is passionate about providing the leadership necessary to find the cures and end the pain for everyone.
Suzanne N. Grenell, MBA, is a creative writer, poet, motivational speaker, and author of several inspirational books, including End The Pain; Neuropathic Facial Pain Expressions and Impressions. She became an active volunteer in helping others after suffering with trigeminal neuralgia for a dozen years, and overcoming two bouts with breast cancer. She is now pain-free, cancer-free and medicine-free. After earning a Master of Education degree at the University of Minnesota and an MBA at Arizona State, she taught high school social sciences for six years and served in worldwide positions with Intel Corporation for 23 years. She is a former member of the TNA-FPA Board of Directors, and lives in Scottsdale, AZ.
Elizabeth Cilker Smith is recently retired after 25 years at Cilker Orchards. There she served as Vice President assisting with the development of commercial, residential and office development in Silicon Valley, California. During that time she organized the Town of Los Gatos business Boulevard Community Alliance, served on the General Plan Committee, presided as President of Los Gatos Rotary and was a member of various nonprofit boards. After suffering from Trigeminal Neuralgia for 6 years she had a successful micro- vascular decompression surgery. Since then her passion is to help others so no one suffers the traumatic pain that afflicted her. She served as Secretary of Trigeminal Neuralgia Association and later became the West Coast Coordinator of FPRF.
Through her parents, she facilitated the donation of the William H. and Leila Cilker grant to the DNA Genetic Research Project. Elizabeth holds a MA in Education, serves on the Cilker Orchards Management Corporation Board, and the West Valley Community College Advisory Board for the Bill and Leila Cilker School of Art and Design.
Pat Tomasulo is the Sports Anchor and Reporter on the WGN Morning News. He joined WGN-TV in June 2005. Prior to coming to WGN-TV he was a Sports Reporter and Anchor in Buffalo, New York and in Rhinelander, Wisconsin. In August of 2009, Pat was voted one of the top five broadcasters chosen to sit alongside Kelly Ripa as co-host to “Live with Regis & Kelly” as part of a nationwide promotion. He was also one of the hosts of “Shaq Vs,” a nationally televised reality show featuring basketball superstar Shaquille O’Neal. Pat and Amy Tomasulo have raised over $1,200,000 at four “Laugh Your Face Off” comedy fund-raisers benefiting The Facial Pain Research Foundation at the Chicago Laugh Factory.100% of the proceeds were donated to The Facial Pain Research Foundation. Pat Tomasulo, the event's host and one of the scheduled comedic performers, has personal experience with the disease as his wife, Amy, has suffered from its devastating effects for years.
Jay Winer, independent marketing/public relations consultant and fund-raiser, formerly served as executive director of public relations and community affairs for The Grove Park Inn Resort and Spa in Asheville, N.C. He achieved over 50 national television specials and print featurestories as well as regional and local news coverage, resulting in over $15 million in advertising value equivalency. He worked with his wife, Maddy, to book popular entertainers and direct over 100 theatrical and concert stage events. He is a leading supporter of historical resources, National Historic Trust and the humane society in the Asheville area. Jay has provided volunteer services to the TNA-FPA for twelve years. Although not affected by facial pain, he gained compassion for people in pain when he heard their stories and talked with them while videotaping a series of national TNA conferences led by his friend, Michael Pasternak. Jay said he became hooked on the cause of finding a way to bring relief to men, women and children struggling with terrible pain. He and his wife, Maddy, have homes in Asheville and Indialantic, FL.
Former Trustees
Jean Raymond is retired after working over 25 years in computer programming, software design,
network architecture, database management and tracking systems. Jean has rendered technical support for
companies such as Western Electric, Digital Equipment Corp. and Dartmouth College/Dartmouth
Medical School. She has served on TNA-FPA Board of Directors since 2010. Jean was appointed
to the FPRF Board of Trustees to serve as liaison with the TNA-FPA board. She lives in Middlebury, VT.
Albert Rhoton, Jr. 1932-2016
World Neurosurgeon of the Year Albert Rhoton, Jr., MD., was a Facial Pain Research Foundation (FPRF) Trustee.
He had treated over 3,000 patients with trigeminal neuralgia and related neuropathic pain before he retired and became the inspiration for the FPRF’s cure research projects. His guidance and vision was evident when he proclaimed the founding of The Facial Pain Researth Foundaion was
“ONE OF THE MOST IMPORTANT DAYS IN THE HISTORY OF TRIGEMINAL NEURALGIA!”
In March, 2013 He said “it is time to find a cure!” and the Foundation’s
International Consortium of renowned scientists moved forward.